Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

How it all started...Part 1

I have a feeling this will be a very very very long post! I think I will have to break it into parts. There is so much to say, and I know I personally can't spit everything out in one long post. Let's give this a whirl shall we?

What happened to Hailey Part 1:

August 6th 2011 (Saturday) started out normally. Josh was home and getting ready to leave to work out when Hailey woke up. He helped her into bed and I thought we would be able to sleep for at least another hour or so. Josh went downstairs to get some breakfast and Hailey said she wanted yogurt and she told me she was going to get it herself. I told her to go downstairs and bring the yogurt and a spoon back upstairs. I heard her at the stairs saying, "mom, help me." She has a routine where she goes up and down the stairs all the time and NEVER asks for help. I was up so I went to the landing and asked why she needed help and she just said, "help me." Me thinking she is just being lazy picked her up and carried her downstairs. Josh was still here and I said to Hailey, "ask Daddy to get you yogurt." She said, "No, myself." and she started walking...walking kind of funny. I asked Josh if she looked like she was walking funny like she was dizzy. I asked her if she had an ouch, she said no. I thought maybe her leg was asleep or she hurt her foot on something. As she walked toward the fridge she nearly fell down twice. So now I am freaking out and I say to Josh, something is wrong her walking this way is NOT normal. I asked Josh if I should call a doctor and he said why not. I called her Pediatrician and the Saturday clinic that was open had an appointment at 9:00. I had an odd feeling. What if Hailey wouldn't walk for the Doctor and just clung to me. I wanted them to see how she was walking so I recorded her. We see the Dr. and she asks what's going on. I told her Hailey is walking like she's dizzy and it's freaking me out. Like I thought, she wouldn't walk for them, so I whipped out the video. They check her eyes, ears, nose and mouth. Nothing out of the ordinary. Her eyes are dilating, no fluid in her ears and no sign of an infection or fever. The "Dr." and I put it in quotes because I still don't believe this chick knows what she's doing, says that I need to take her home, feed her, hydrate her, put her to bed and see what happens when she wakes up. If she complains of a headache or vomits take her to the ER. That didn't sit well with me. Has anyones 3 year old complained of a headache before? I kept saying she is walking like she's dizzy, do you think it's a head thing? She repeated to do the above and she will call up later to check up.

So we go home. On the way there Hailey falls asleep. I bring her home and after 1/2 hour she wakes up and is hungry. I feed her, and try and make her drink lots of water. I take her upstairs to my bed and have her lay with me. Josh gets home and we all lay in bed and I am just watching her sleep.

Around 3 pm Hailey wakes up and tries to sit up. I help her but now she is slowly moving side to side. Her head not her whole body. Like she can't keep her head straight. Almost like someone with Parkinson's. I tell Josh I think whatever is wrong it's getting worse. Then Hailey says to me, "Hailey's room?" and it sounds like the words are coming out so slow. I put her down and she is walking 10x's worse then before. I call Josh into the hallway and say we gotta go to the ER I am seriously freaking out. Hailey tries to grab her door knob and keeps missing it. Completely missing it. I look at her and say, "Hailey, what's wrong?" All the sudden I notice her right eye goes crossed and she can't look at me. I am thinking she is having a stroke or something. Josh said to get in the car and let's go NOW!

In the car on the way there Hailey throws up and something keeps telling me it's got to be a head thing. I never said brain thing I always said head thing. I knew something was off. We decided on the Children's Trauma Center at UMC. I am thinking if this is not a trauma I don't know what is. So we go and it's pretty empty we don't have to wait, thank goodness! The triage nurse asks us what's wrong and I explained the days events. She asked if Hailey had fallen, anything run in the family. There was nothing that would explain a lead up to this. She asked if Hailey could stand on the scale. By this time Hailey couldn't even stand. Couldn't put any pressure down on her legs. They tried to have her stand but as soon as she does she almost fell and they stopped. They got us in an ER bed right away. A student doctor comes in (Since this is a learning hospital) and asks us a ba-zillion questions. After that the attending ER doctor comes in and says she believes it's something in her head that is off. She wants to do a CAT scan and see what that says. A CAT scan will tell them if there is anything that is urgent like a bleed in the brain. She said one of us could go with her while she's in the CAT scan. I volunteer since I would be a wreak not having her by me and thinking how freaked out she is going to be. She looks at me and says what is suppose to be mom, but she says it very slow and slurred. It sounds like mwaaa. I know it's getting worse and fast!

They wheel us to the CAT scan machine and I wear a lead apron and I have to hold her arms and hands down. They said it'll be about 3 minutes and as soon and I lay Hailey on the machine she flips out and starts crying. I start singing to her, the only song I could remember was the Dora theme song. As soon as I sang it a few times she calmed down. They put her head into the little holder thing and I kept singing. I was on loop for the entire time thinking to myself, Keep singing or you are going to start crying. Don't lose it now they are almost done. The scan was over and they said they took a little long cause she moved a few times, but they got what they needed.

They wheeled us back to the ER and we waited for the results. It took about 45 minutes, which is good because if they would have seen a bleed on the screen they would have rushed her to the O.R. Since there was no bleed they developed the scans and had the Doctor review it. Again no bleed, but there has got to be something else. The Doctor says since there is no bleed, I want to do a lumbar puncture to see if there is any infection in her spinal fluid. I could feel my heart beat like it was beating slower. How do you do a lumbar puncture on a baby? On my baby? The Dr. said they would sedate her and she will be awake but not feel anything. They will turn her on her side and insert a needle and tube to expel the fluid in her spinal cord. Then they will run tests on that. BUT before we can do all this we need to put in an IV, and a catheter. The first nurse couldn't get a vain, poked Hailey once and missed. Poked her again, found a vain and the vain blew. She then tells us that she has to get another nurse because it's policy that only one person can poke twice then someone else has to try. (this will come into play again later in the days to come). Another nurse comes and pokes Hailey, finds a vain in her hand and it blows. I am getting so beyond irritated right now. She pokes again and it works. She wraps Hailey with a board under her arm so she can't move and tapes her up like Fort Knox. So now that's over they need to put in a cathater. They just need a small urine sample so they choose not to numb Hailey and just go for it. I have never heard such a scream before. I am about to lose it...again. The Dr. comes in and says they are ready for the lumbar puncture and we can carry her to the room. Josh carries her in and lays her down and now they want me to say goodbye and said I could give her a kiss. I LOSE IT! They said it will only be about 20 minutes and I could come back in. As soon as I had to kiss her and leave I was just bawling! Tears and snot over came me. Josh stayed calm, but I broke down. I am thinking to myself that if I am already crying and we don't even know what's wrong yet what's going to happen when we do find out what's wrong? To be continued...